All the attention being given to the Zika virus is a reminder that rare diseases may lurk anywhere, and we never know when someone may fall victim to one of them. But many who contract one of the thousands of classified "rare diseases" are often surprised to find out how common they are.

That is why Newtown resident and spokesperson for the Connecticut-based National Organization for Rare Disorders (NORD) Kristen Angell is working to promote the upcoming global Rare Disease Day. This year, she said, Rare Disease Day falls on February 29, "the most rare day on the calendar."

"According to the National Institute of Health, a disease is classified as rare if it affects fewer than 200,000 Americans," Ms Angell said. "That means one in ten Americans is affected by a rare disease, and two-thirds are children."

So what are some of the rare diseases Americans likely know about?

"Most types of cancer are classified as rare diseases," Ms Angell explained. "Some of the others are ALS, Huntington's disease, and cystic fibrosis."

She said while many of the cancers and other more well-known rare diseases have robust organizations and supporters working to promote awareness and research, NORD works to support and educate about all rare diseases, including those that go more than seven years with "undiagnosed" conditions.

"We work with many nonprofits connected to these diseases to help support their mission and goals," Ms Angell said. "We collaborate with the NIH and the FDA, as well as industry professionals, caregivers and patients. And we also help people who want to establish support organizations around some of the most rare conditions - those who want to start up a nonprofit around the disease affecting their loved one."

Locally, NORD works at the federal and state levels as advocates for rare disease patients - and 245 organizations are currently operating with support from or under the NORD umbrella.

According to the organization's website, NORD offers assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

NORD has seven different medication assistance programs designed to help patients who are without insurance or are underinsured obtain access to these medications.

The organization more recently has established a patient/caregiver speakers bureau through which volunteers will share their stories to promote better understanding of the challenges of living with a rare disease.

Speakers are paired with opportunities to speak in classrooms, on university or medical school campuses, or at local club or community events.

Ms Angell said Rare Disease Day began in Europe nine years ago and began involving NORD as a US sponsor of the event and a program of nationwide statehouse advocacy around the needs and challenges that patients and family members of rare disease sufferers face.

"On February 25 at the Capitol in Hartford, we'll be hosting one of one of 36 nationwide events to draw attention to Rare Disease Day," she said. "This year Rare Disease Day falls on February 29, which is the rarest day of the year, and we're really excited to host all these events nationwide."

Ms Angell hopes patients and families join government and health officials on that day to help raise awareness on behalf of rare disease sufferers and the work NORD is doing.

"We have a great website - rarediseases.org - that has a lot of good information for patients. And if people go to rarediseaseday.us, it showcases all the events being hosted from activities at children's' schools to training sessions for medical professionals," she said.

Anyone who wants more information or who may want to support someone they know diagnosed with a rare disease, and anyone who wants to support of volunteer with NORD, Ms Angell invites her Newtown neighbors to reach out to her through Connecticut's national headquarters via e-mail at or calling 203-744-0100.kangell@rarediseases.org